My Experience With Dr. Kaufman at the Open Medicine Institute

[searcher]

When I see Dr Kaufman my insurance reimburses me a paltry $37 for the hour visit. But, so far, they have covered every blood test I have gotten, even the more esoteric ones like NK cell function. I have a Blue Shield PPO if that helps.

 

[Strawberry]

So how does Dr Kaufman's clinic work for an out of state person?

I have a Regence PPO which I believe is similar to a Blue Shield PPO, so I am hoping I can get reimbursed some for office visits and blood draws. But I can only afford to fly to California once without knowing how much I will get back from insurance. How many visits does it take? I really want to go, but I haven't seen anyone post in this thread that wasn't fairly local and is able to drive to the appointment. Although admittedly I have missed much in this thread...

 

[Billt]

So how does Dr Kaufman's clinic work for an out of state person?

I have a Regence PPO which I believe is similar to a Blue Shield PPO, so I am hoping I can get reimbursed some for office visits and blood draws. But I can only afford to fly to California once without knowing how much I will get back from insurance. How many visits does it take? I really want to go, but I haven't seen anyone post in this thread that wasn't fairly local and is able to drive to the appointment. Although admittedly I have missed much in this thread...

Strawberry, I am from New Orleans so I was not local at all. We had to fly and stay in hotel. I had to lose work and it took a toll on my son. But we did it because there was no one else here to turn to. OMI lists there prices ( I believe ) on their web site. Since we are so far away Dr K will do phone consult instead of visit which save us time and $$.
That way I don't have to take off or fly out there. I don't have much money either but knew my son's health is # 1

You are a lot closer than me. Hopefully you PPO will cover blood work . As far as Dr visit they may be able to tell you before you go. OMI does not deal with ins at all. Hope this helps

 

[Strawberry]

Thank you @Billt that is helpful. But one more question, to you if you know or anyone that can answer.

What about when it comes to prescriptions? From what I understand, a doctor by law has to see you in the office once per year to receive prescriptions. Do I have to take an annual trip to California? Of course, hopefully one year after my initial visit a trip to California will not be so overwhelmingly physically difficult for my body. Or can they work with a local doctor and make them write a script?

Okay, make that two questions. I have heard some medicines they prescribe require regular blood draws. Can I get those locally? Say at my local hospital lab that uses Quest labs?

Sorry folks, I am just a TAD bit of a control freak..... It is just too difficult for me to fill out and turn in those papers when I don't have it mentally figured out how it will happen.

 

[SOC]

Thank you @Billt that is helpful. But one more question, to you if you know or anyone that can answer.

What about when it comes to prescriptions? From what I understand, a doctor by law has to see you in the office once per year to receive prescriptions. Do I have to take an annual trip to California? Of course, hopefully one year after my initial visit a trip to California will not be so overwhelmingly physically difficult for my body. Or can they work with a local doctor and make them write a script?

Okay, make that two questions. I have heard some medicines they prescribe require regular blood draws. Can I get those locally? Say at my local hospital lab that uses Quest labs?

Sorry folks, I am just a TAD bit of a control freak..... It is just too difficult for me to fill out and turn in those papers when I don't have it mentally figured out how it will happen.

This is based on my experience. OMI may have different in-house rules.

By law, the doctor has to see you in person once a year to prescribe for you. While they cannot make a local doctor write prescriptions, it might be possible to find a local doctor who would cooperate with Dr K and write prescriptions. Still, Dr K will still probably want to see you at least once a year if he is the doctor managing your care.

Airplane trips are not too bad if you're willing to act like the serious invalid that you are. Get wheelchair assistance curb to curb at the airport. You can request that when you order your ticket. Let your traveling companion or the wheelchair assistant handle everything at the airport -- checking and picking up luggage, getting you through security, etc. Put on sunglasses and headphones and just ride. You, like I, will have to let go of your control issues during this time to best manage the trip.

Pick a hotel that has room service so you don't have to go out once you are there, or bring your own minimal-effort meals. Ask for a room close to parking or lobby -- whatever will minimize your walking. Arrange easy transport to Dr K's office if you don't have a traveling companion. The hotel desk will often help you with that. Stay in bed as much as possible when you are not seeing the doctor. This is not a good time to be touristing. It's tempting, but if you want to make the long trip to a specialist work for you, you need to do everything you can to minimize the chance of PEM. It's boring, and irritating to be utterly dependent, but seeing a specialist is critical to getting improvement, so it's worth sucking it up and doing what you have to.

I get all the blood draws I can have done locally done at home. There are a few specialist immune tests that my INIM doctors prefer to do at their own lab, but for everything else they just send me a lab request that I take to my local Quest Diagnostics lab.

You might not want to dawdle too long getting that appointment with Dr K. His wait time to appointments is getting longer every month. That's a good sign that the practice is likely to close soon. If that happens, you won't be able to get an appt at all and you'll be SOL.

 

[Billt]

Thank you @Billt that is helpful. But one more question, to you if you know or anyone that can answer.

What about when it comes to prescriptions? From what I understand, a doctor by law has to see you in the office once per year to receive prescriptions. Do I have to take an annual trip to California? Of course, hopefully one year after my initial visit a trip to California will not be so overwhelmingly physically difficult for my body. Or can they work with a local doctor and make them write a script?

Okay, make that two questions. I have heard some medicines they prescribe require regular blood draws. Can I get those locally? Say at my local hospital lab that uses Quest labs?

Sorry folks, I am just a TAD bit of a control freak..... It is just too difficult for me to fill out and turn in those papers when I don't have it mentally figured out how it will happen.

SOC covered most of this with you. Just my experience so with Dr K, he has written R/x's and bloodwork and sent them to me. We were able to do both locally. It has been less than 2 months since we have seen him. He did not mention that we would need to see him at least one a year, but I would think that would be expected and I would probably want to see him once a year anyway. The trip was not the easiest for my son but we did keep t very low key with lots of rest and we made it fine. I would not hesitate to do it again. Hope this helps... Bill

 

[Misfit Toy]

@jess100 -could you share what their herbal cocktail is for SIBO?

 

[RUkiddingME]

Good new awareness documentary featuring Dr. Kogelnik who works alongside Dr. Kaufman at the OMI

 

[Strawberry]

That's a good sign that the practice is likely to close soon. If that happens, you won't be able to get an appt at all and you'll be SOL.

Nooooo! I'm doing it! I've been putting up with this for 20 years, I can't do it much longer. I have reprinted the paperwork, and will leave it here at work since I still have not filled out the copies at home...

Thanks to all for the help. (and the kick in the rear)

 

[Never Give Up]

You might not want to dawdle too long getting that appointment with Dr K. His wait time to appointments is getting longer every month. That's a good sign that the practice is likely to close soon. If that happens, you won't be able to get an appt at all and you'll be SOL.

When you said "That's a good sign that the practice is likely to close soon." did you mean close to new patients or that the whole practice would shut down?

 

[SOC]

When you said "That's a good sign that the practice is likely to close soon." did you mean close to new patients or that the whole practice would shut down?

Closed to new patients, not shut down. In medicine "closed practice" usually means the doctor or doctors have reached their limit of patients and will not be taking new patients until enough old patients have left that they can manage to take on more new patients. Some doctors with closed practices keep a waiting list so that when an old patient leaves, they can immediately fill the slot with a new patient.

Fortunately OMI has no reason to shut it's doors any time in the near future.

 

[Strawberry]

Closed to new patients, not shut down.

I wanted to give a little update for anyone (like me) that is slow on the draw. I made my appointment last week, and it is mid December. If my brain is working correctly, that is 5 months out...

 

[AaroninOregon]

I wanted to give a little update for anyone (like me) that is slow on the draw. I made my appointment last week, and it is mid December. If my brain is working correctly, that is 5 months out...

Whoa...his plate is filling up fast.

 

[btaylor]

Greetings. Going to Dr. Kaufman this November and looking forward to it very much.

Question: I understand Dr. Kaufman will often send blood draw to Focus Labs for the deep-viral tests: HHV-6, CMV, Epstein Barr ...

What is the approximate cash price of the above labs, said to be the most expensive part of the first visit to OMI?

I've got very high deductible insurance plan and wonder if the cost for those three labs around $1000, $2000, $3000 cash or what? ... A poor man here just wondering what to expect ... thanks in advance for any replies!

 

[Billt]

Greetings. Going to Dr. Kaufman this November and looking forward to it very much.

Question: I understand Dr. Kaufman will often send blood draw to Focus Labs for the deep-viral tests: HHV-6, CMV, Epstein Barr ...

What is the approximate cash price of the above labs, said to be the most expensive part of the first visit to OMI?

I've got very high deductible insurance plan and wonder if the cost for those three labs around $1000, $2000, $3000 cash or what? ... A poor man here just wondering what to expect ... thanks in advance for any replies!

Hi btaylor, most of my test were done by Quest including the hhv-6. they were all most were covered by my insurance. I did have to pay for 1 or 2 but they were not costly. less than $ 100.00 I think. your my be different.
Sorry I can't help more.... Be well... Billt

 

[Folk]

Just had my first (and second) appt with Dr. Kaufman 2 weeks ago.
He's trully an amazing doctor. The appt lasted arround three hours, he went through each detail with me and in the end answered to all my questions with no rush at all.
We took some blood samples for the tests I wasn't able to get done in my country via insurance and even though I got a lot of them done, it was still pretty expensive, arround 3k.

On the second appt, all my results were ready and I did a SIBO test.

Turns out I had:
SIBO STRONGLY positive. (I had that test done before in Brazil and it was negative, Dr. Kaufman said from the begining he was pretty sure it was a false negative, and it turns out he was right, unless there's a false positive hehe)
MTHFR Mutation
Herpes Virus high IGG
Epstein Bar high IGG
CMV high IGG
Mastocytosis (not positive on tests, but he said he still suspects I might had it due to symptoms, specially allodynia)

What he prescribed:
LDN (Starting at 1.5 and up to 4.5 in fifteen days) for pain and general health.
Anti-histamines: Zyrtec, Claritin, Ketotifen for the Mastocytosis.
Rifaximin and Neomycin for SIBO.
10.000Ucg B12 Injection and 15Mg Folate for MTHFR.
Famvir for High viral titers.
And some suplements which I didn't start to take yet (If I remember correctly it was Quercetin, CoQ10 and Lipoic Acid)
(I'm also taking Lyrica)

I already started the LDN, Zyrtec, Claritin, B12 shots and Folate. The first week was ok, no side effects but now (begining of the third week) I'm feeling an worsening in my brainfog, gut issues and perhaps the fatigue, and no good effects until now (still at 3.0 LDN and just uped from 5 to 10Mg Folate)
I was staying for 2 weeks in a hotel, with not much of a good sleep, and having to go out to lunch and dinner, walking a lot more than I'm used to, going to crowded environments and not being able to take such good care at my eating habits as I can at home. And now I just got a 24 hours flight maratone with 3 planes to get to Brazil.
So probably this has been contributing to the worsening of my symptoms, but what puzzles me the most is the increase in gut issues, as it usually don't come together with PEM for me.
I also noticed something that looks like genital candida (which I used to have each 2 weeks something like 4-5 months ago, during a crash, but it was a while since I didn't got it) and I wonder if it could be the LDN causing it as I've read about that LDN/Candida relation in the past (and went through some of it now), but not sure if that's something to rely on.

So basically that's it...
Still waiting and hoping for good results. And if anyone have anything to enlighten me I would apreciate that.
I also hope this can perhaps help some of you.

 

[MeSci]

Turns out I had:
SIBO STRONGLY positive. (I had that test done before in Brazil and it was negative, Dr. Kaufman said from the begining he was pretty sure it was a false negative, and it turns out he was right, unless there's a false positive hehe)
MTHFR Mutation
Herpes Virus high IGG
Epstein Bar high IGG
CMV high IGG
Mastocytosis (not positive on tests, but he said he still suspects I might had it due to symptoms, specially allodynia)

There's more than one MTHFR variation ('mutation') and they may not mean much. @Valentijn is an authority on SNPs, and she gives some info on MTHFR here.

There are also a range of Herpes viruses - which one(s) do you have high IGG to?

 

[Billt]

What he prescribed:
LDN (Starting at 1.5 and up to 4.5 in fifteen days) for pain and general health.
Anti-histamines: Zyrtec, Claritin, Ketotifen for the Mastocytosis.
Rifaximin and Neomycin for SIBO.
10.000Ucg B12 Injection and 15Mg Folate for MTHFR.
Famvir for High viral titers.
And some suplements which I didn't start to take yet (If I remember correctly it was Quercetin, CoQ10 and Lipoic Acid)
(I'm also taking Lyrica)

This is very similar to what he prescribed for my son except for the anti-histamines. The neomycin took a toll on his gut, but he got through it. So that may be why you are feeling bad. Plus all the travel can really wipe you out.

Hope you start feeling better soon. Bill

 

[Billt]

Hi btaylor, most of my test were done by Quest including the hhv-6. they were all most were covered by my insurance. I did have to pay for 1 or 2 but they were not costly. less than $ 100.00 I think. your my be different.
Sorry I can't help more.... Be well... Billt

btaylor , just got a bill from Quest for 2 blood tests they did not cover. NK cells and MTHFR test. They were $ 500.00 total plus the other $ 100.00 I paid before. So I am at $ 600.00 for blood test so far. I think that is all of them.

 

[Folk]

There's more than one MTHFR variation ('mutation') and they may not mean much. @Valentijn is an authority on SNPs, and she gives some info on MTHFR here.

There are also a range of Herpes viruses - which one(s) do you have high IGG to?

Yes I know there's more than one mutation but I don't understand at all about it. It meant enough for him to say I need to take B12 and folate.

The herpes I forgot to mention and I have to check again, I think it was 1 and 2. I know I was ok with HHV6.

This is very similar to what he prescribed for my son except for the anti-histamines. The neomycin took a toll on his gut, but he got through it. So that may be why you are feeling bad. Plus all the travel can really wipe you out.

Hope you start feeling better soon. Bill

And how's your son doing? gonna check your later posts, cause its been a while since I don't get here.
And I didn't start the neomycin yet so can't be it heheh
But I perhaps it's the hard travelling, I'll rest for a few days and see how things turn out.